Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

The most magic 30 minutes of my day

Yeah, that’s the ticket…

Yesterday I had a nap. I stepped away from my desk for about half an hour to recharge my batteries. I walked 5 minutes to my car, which was in underground parking quite a ways from my office, put the seat back, put the headphones on, made myself comfortable, and I did my progressive relaxation.

I even got about 15 minutes of sleep in the process.

And when I woke up (which was 2 minutes before the alarm I’d set), I felt amazing. Refreshed. Alive. Human.

Then I collected myself, walked the 5 minutes back to my office, and I got on with the rest of my day.

I have heard it said that naps can disrupt your sleeping pattern, and it’s better to keep yourself awake and go to bed early. They obviously do not push themselves to perform at the level I do, from the moment I wake up in the morning. From the moment my feet hit the floor, I’m in GO mode. I have to be, because getting myself up in the morning is a monumental task that takes everything I have, some days.

Anybody who thinks I can make it through my day on a night’s worth of sleep has obviously never experienced the kind of exhaustion point I get to, around 2:00 p.m. each and every day. It is pretty brutal. By the time the afternoon rolls around, I’ve been going full-tilt-boogie for 6-8 hours. I can continue push through, sure, but I am good for nothing, the rest of the afternoon. Seriously, good for nothing. Even the things that I love doing — and that I push myself to do — turn out to be a waste of time.

Wheels spin. But they get no traction.

But if I can sleep… that is another story.

Knowing that I can sleep later on, and that I’ll be able to recharge my batteries, also makes it possible for me to push harder at the beginning of the day. When I think I’m going to have to pace myself… that my energy stores from a night’s sleep are going to have to last me all day, I hold myself back in the mornings. I’ve just now realized this, actually. When I wake up tired

Today is a completely new day — or so I keep telling myself. I’m a little tired this morning, to be honest. It’s been a long week, and I’m tired already at 7:00 a.m. I will pick up speed later today, when I am working. I’m not going into the office, so I have more time to focus on working, and less to spend driving. I also have more time to spend thinking about my own projects and making some good progress on them — without the pressure of daily performance of way too much work in way too little time.

So, there is hope for me today. I don’t have to be subjected to the upset and uncertainties of all the people around me (I came back from my nap yesterday to find my teammates huddled in a corner bitching and complaining about working conditions.) I can set my own pace and do my own work, without others interfering with their emotional incontinence.

It’s a relief not to be at the office, because the environment there is pretty depressing. It’s just a constant pressure cooker of uncertainty and chaos. When I say “chaos”, I mean there is a total lack of recognizable patterns to anything that happens. That is to say, there is no regular cadence, no regular pace, not much that’s predictable at all, from a day-to-day standpoint. It’s constant interruption and constant uncertainty. It’s not like I need any guarantees in life. But it would be nice to be able to not have everyone around me intent on interrupting my train of thought to ask me questions they can answer themselves.

It’s almost as though they are just stopping by to feel a little relief from their uncertainty.

As a matter of fact, I think that’s exactly what they’re doing — just stopping by to get a little boost to their self-confidence and sense of belonging. Because that’s what I bring to the table — respect for others, the ability to calm people down when they are all worked up, and a certain sense of calm in the center of the storm.

On the bright side, it’s great that I’m able to do this for people. On the downside, it doesn’t help me get my work done… and it’s actually keeping me from making progress in my own workload. Other people not being able to manage their own internal state, is probably the biggest hurdle to my own productivity. It’s not that their frame of mind is upsetting me. They are literally keeping me from doing my work, because they keep running to me and interrupting me and hijacking my workflow, to answer questions they never should have had to ask.


Anyway, in another 13 weeks, this is going to cease to be my problem. Oh, hell — if I can get things wrapped up before then, I’ll be free to go even earlier. I don’t have to be locked into a specific timeframe. I have had this July deadline in my mind, because that’s when I’m scheduled to be done with my big-ass project. But I might get things done even before that.

So, there’s some leeway there. And I’ve just thought of a way I can speed things up — some of the stuff I’m depending on others to do for me, I can do myself. They’re not experienced (or actually smart) enough to figure it out. Plus, they friggin’ hate my guts for reasons that are all about their crappy self-regulation, their incompetence, their jealousy, their brown-nosed politicking (which cannot stand the glare of objective scrutiny), and their sad work ethic (or lack thereof — I actually expect them to do their jobs, ogre that I am)… as well as shoddy management which just lets them get away with anything they damn’ well please.

So, the inmates are running the asylum. In a very big way.

And I have less than no confidence in them.

But the happy and sane part is, it doesn’t matter. They can be all pissy and pitch their hissy fits from their corner of the corporate cosmos. I can just work around everyone, and actually get sh*t done. I don’t have to be dependent on them to get their acts together, in order to move forward. And on top of that, I can be sharpening some excellent skills of my own in the meantime.

This task is a huge opportunity, but those idiots are not seeing it. I can see it plain as day, and I can hear the trumpets from heaven loud and clear. Their ineptitude is opening a door for me to step through, and that makes me incredibly happy, now that I think about it. For that matter, I can spend my weekend working on this, and actually get it all done in time for Monday — AND have it be an excellent investment in my future.

So, that’s good. And it’s giving me a big boost. It’s not all a waste of my time. It’s not all an exercise in futility. Far from it. It’s actually a positive thing, and turning it around in my mind to see the opportunity and the door opening a little more to my fantastic future is the first step in the right direction.

As long as my head is clear about this, and I’m rested and energized and keeping my batteries charged, it’s all good.

Later today I will have my nap. My magical 30 minutes to recharge my batteries. But for now, it’s…



Getting There

The road most traveled

Of all the challenges that burn me, time and again, getting started on what I’m supposed to do, is by far the most persistent, and the most problematic. In fact, even as I type this, I’m not starting what I’m supposed to be doing tonight.

Rebellion. Resistance.

I want my time to myself. I want my life back. I don’t want to have to devote my time and energy to other people’s business. I want to have my own thing going.

Resistance. Rebellion.

I don’t want to have to do laundry. I don’t want to have to work late. I don’t want to have to register my car before the end of the month. I don’t want to have to watch what I eat.

I want to sit around and eat pie and drink coffee and watch Seven Samurai over and over and over, till I know all the words by heart – in Japanese.

I don’t waaaaaanna have to answer to anyone else, anytime, anywhere, any-how. Boo f*ckin’ hoo.

Thing is, people pay me to part with my time and my autonomy. They pay me to do things for them that they can’t do for themselves. They compensate me for my sacrifices, and they make me a part of their little tribe, in exchange for my almost-mad eagerness to dive in, pitch in, and Make It Better.

I once heard that Lady Gaga sometimes wakes up in the morning and she doesn’t know how she can get out of bed. Then she thinks, “But I’m Lady Gaga!” and lo and behold, she’s UP.

Get up, Trinity. Get UP.

Now, I’m no Lady Gaga (what a sight that would be). And that Trinity chick would probably snap me in two if she came across me in the Matrix. But I get what they’re saying. We create these personas of ourselves. And we become their agents, their servants. We become the minions of our invented selves. And that’s alright. We all do it. No shame in that — unless, of course, you craft a truly shameful persona for yourself (Jared Loughner comes to mind).

We all have our schtick. We all have some personality we project into the world — a collection of habits and characteristics that suit us and work, on a certain level.We become Survivors. We make ourselves Victims. We become Rebels. We turn ourselves into Martyrs. We serve the gods of the facades we parade before us in the world, as though that were truly US.

The other night I stumbled upon a PBS special about the Stonewall Uprising in New York City — the start of the modern gay rights movement in 1969. One more thing to be grateful for: that I was not a homosexual male living in the 1960’s, when police officers were making appearances at schools, warning children away from “choosing a homosexual lifestyle” because WE WILL FIND YOU. YOU CANNOT HIDE. WE WILL FIND YOU.

Lord, but it must have sucked, to sit in a classroom in school, having this bespectacled, pompous, white, heterosexual male preaching at you about how you should not “choose” something you already knew you were… and had known since you were, oh, about six… and looking forward to a life of hounding and serial incarcerations.

How happy I am to live when we live… in this Very Different World.

But I cannot help but think about the effect that messages like “Don’t be a queer” and “We will get you” would have on someone’s persona… their perceived place in the world. I cannot help but think about the queers and Gypsies and Jews and kids born different, whom the Nazis singled out for extermination. I cannot help but think about the rape and incest and molestation survivors who have to piece together their lives from the shattered pieces of what was once whole. I cannot help but think about the left-handed “sinister” people of the once-upon-a-time world who were literally considered evil, if they were not right-handed. I cannot help but think about all the people who have been on the wrong side of “right” — whether by choice or biology or accident or fate — and what that wrong-ness made of their own personas.

I wonder if it made/makes them tougher, smarter, meaner… different than how they would be, if they were more like everyone else, without those unnameable or unspeakable hidden aspects of themselves.

I wonder if my history of TBIs and all that I’ve been through as a result — whether it was the names and the insults rained down on my head by an impatient, disgusted, verbally aggressive father… or my mother’s tight-lipped disapproval that simmered a long-suffering while, until she just couldn’t take my shit anymore and grabbed me in a vice grip, digging her claws into me to get me to “be-have“… or the kids who hounded me and made my life a living hell for the duration of 5th and 7th grades (different schools, same types of rat-bastard kids)… or all those people who loved me so much, until they found out that their imagined version of me wasn’t very real at all, and it was all my fault for letting them down..

What-ever. Bottom line is, this is my life. And despite all my whining, I do get to do what I want with it. I get to decide for myself how I carry myself in the world. I get to decide how I interact with others. I get to decide how I walk through life, if I smile and shrug, or if I start swinging. I get to say how much of my time I spend on what, knowing what the consequences will be — for good or ill.

I get to pick and choose how I handle things — if I bitch out the woman on the phone, who screwed up my car registration form, or if I stay cool and just explain that by the time the mail gets delivered to me with her corrected form enclosed, it will be too late for me to re-register my car in the lawful timeframe. It’s up to me, whether I blame her for the problem, or if I remember that I’m the one who waited till the very last friggin’ minute before contacting the insurance company for that blasted form.

My life. My choices. I get to choose where I want to go. And I’m getting there.

Time to get back to work.

Repairing the damage

I’ve been thinking about the article I came across the other day about TBI unfolding over the course of months, rather than the initial timeframe of the obvious injury. My initial reaction was, “This is good – someone is getting a bit more of a clue.” Then, as I read the article, I thought, “Well, d’oh — they have to do a clinical study with rats to figure this one out, when all these people with TBI are walking around in front of them, exhibiting long-term issues, despite “just getting their bell rung”… What is wrong with the medical/scientific establishment?!”

Then I calmed down and decided to be happy that they’ve found research that supports what so many of us know — TBI can wreak havoc with your life for a long, long time, even after the physical bump on your head has gone down.

Whatever the point of view, whatever the source of information, I think we can all fundamentally agree that TBI is a bitch, and while it helps to understand the nature of the condition, its scope, and its ramifications, what we really need (and the article above speaks to this) is a way to address these issues.

The medical/pharmaceutical industry, by their nature, are likely to look to pharmacological “solutions” — pills that will interact with the hippocampus or other related parts of the brain, to counteract the progression of TBI-related symptoms. The psychotherapeutic industry, by right of their orientation, may look to psychological / cognitive-behavioral approaches. And insurance companies, by their nature, may put checkpoints in place to disqualify TBI “experiencers” from medical treatment after a certain point — say, after six weeks worth of treatments — so they don’t incur long-term costs from paying for all those people who got clunked in the head may have prolonged periods of difficulty.

[As an aside, the truly chilling part of the insurance scenario for me, is the prospect of all these people finding out about the devastation that TBI can cause, and then deciding that if they’ve sustained one, their goose is cooked, so they really can’t expect to ever go back to the way things once were, so why not just give up and file for insurance pay-outs and/or public assistance/disability… while the medical/pharma/insurance industries are keeping two steps ahead of them, policy-wise, and ten steps behind, treatment-wise… and not only are hurt people not getting the help they need (or believe they need) from the trained experts, but the trained experts — by right of their ignorance and/or wilful decision to avoid incurring costs and/or outright greed — are blocking their access to real, substantive help, thus plunging the lot of them/us into a morass of ignorance-fuelled helplessness.]

Anyway, back to my originally scheduled post…

Outside the realms of medicine and pharma and insurance claims, what do the rest of us do? What can those of us do, who have sustained TBI, who are outside the fold, in terms of getting help? Are we doomed to perpetual dimness, impaired memory, a short-changed life, and a host of physical problems that our doctors cannot possibly treat?

Perhaps. Certainly, it happens. All too often. But it doesn’t have to. This has been my perspective and my belief, almost from the start of this blog — a firm personal conviction, even faith, that TBI does not have to be the final judge and jury of our lives, condemning us to a marginal existence marked by confusion, disorientation, rage, hate, and fear. Things can get better. Things do get better. They will get better.

Now, anyone could argue that with me and point to countles examples of TBI situations that didn’t get better. All the vets who return from overseas with TBI and PTSD who end up in jail or taking their own lives. All the survivors of car accidents and assaults and falls who fade away into the shadow lands of the neurologically impaired. All the folks who never fully understand why it is their brain isn’t working like it was before, and can’t figure out how to get back to a level of functioning they’re truly comfortable with. There are myriad stories — all of them true — about how TBI is a main ingredient in a recipe for disaster.

TBI does damage, certainly. Short-term damage. Long-term damage. It unfolds unpredictably over time, and too little is known about it for mainstream help to be readily available. There are steps forward, there are steps back. And since every brain is different, you’ve got yourself a vast array of possibilities, when it comes to plausible explanations for why things are so screwed up… and a vast array of possible responses to those reasons.

But here’s the thing — at least, for me. The human brain is “plastic” — that is, it changes over time, depending on stimuli and the internal workings of the person it belongs to. It responds to biochemical stimuli, it responds to physical input, it reacts to physiological conditions. And while neurons and axons and synapses may be totally  mucked up by the wrenching, tearing, shearing action of traumatic brain injury, neurons that fire together wire together, so as long as there are at least some neurons still viable, there is opportunity for change.

There is a virtual guarantee that there will be change.

And the key to me is that we are in charge of that change.

Oh, certainly, there are aspects of life which are totally beyond our control. Injustice and unfairness and exploitation and oppression are part and parcel of the human experience, and they happen to us daily — just because we’re alive. But the thing we CAN control, is our reaction to those things. We can choose how to approach these challenges in life — as violent opponents given to rage as a driving force in attacking the wrong-ness of life… as curious, engaged participants in life who choose to contribute to a solution… or as a combination of those two in different parts of the spectrum. Our reactions, our involvement in life, fashion the internal chemistry of our brains, and our plastic brains respond with gusto to whatever we send their way. They can’t help it. That’s what they do. The brain changes. It can’t help but change.

When you experience a TBI (or two or three… or nine – like me), the input that you receive can be terribly confusing and disorienting. It’s messed up, no doubt about it. Your wires are crossed. You’re confused and scared and walking around with a rage-provoking hair-trigger. Your brain is getting constant signals that SOMETHING IS WRONG! SOMETHING IS WRONG! WTF?!?!? SOMETHING IS WRONG!!!! All the old ways seem like they’re gone for good, and you can’t find your way back.

But it doesn’t need to stay that way.  Because if you stick with it, one way or another, you can find your way back. You may not find your way back to the exact same place you were before, and you may never regain the exact same old abilities you once had, but those old abilities are not the only ones you have at your disposal. You have a ton of abilities you don’t even realize you have, and if you never test yourself, never push yourself, never get outside your comfort zone, you’re not giving yourself the opportunity to discover and develop them.

In many, many ways, TBI is like a natural disaster that destroys your home. Maybe it’s like a river that floods and either washes away or damages beyond repair all that you once held dear. Maybe it’s like a tornado that touches down in your town and not only destroys your home, but the homes of everyone close to you. Maybe it’s like a wildfire that takes out one house while leaving others intact… and that leads to even more damage from the water used to put out the fire. Maybe it’s like an earthquake or sinkhole that buries or swallows your house and every earthly possession in one fell swoop.

The old ways of doing things are gone. The old ways of thinking, of acting, of relating, even of walking down the street… gone. The memories may be gone… or the sense of humor… or the sense of balance… or the quiet in your ears — gone. But you can’t just sit around and worry about the things that are gone… the things that were lost in the fire or the flood or the tornado or the earthquake. You’ve got to get back on your feet, repair what damage you can, and resume some semblance of life.

Not that any of this is easy. Far from it. But people go through disasters every day, some of them more survivable than others. And somehow we survive. WE repair the damage. We patch the holes. We keep walking or paddling or steering the vehicle in the direction of our choice.

And we survive. We even thrive.

Speaking of which, it’s time for me to get to work. I have three deadlines to meet before Monday. Three excellent problems to have.

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